Our Stargardt’s Journey
I cannot believe how one sentence can change your life so dramatically but this was to happen to our family one fateful day in September 2015. We had been holidaying in St Ives, Cornwall in the summer and I noticed that my then seven-year-old son Ethan was struggling with distance vision so I made a mental note of getting his eyes checked once we were back. I remember dotingly looking at my two children one evening whilst on our holiday thinking my life was perfect for that moment at least. Little did I know that in a few weeks, our lives would be turned upside down and the walls would come crashing down.
I decided to make an appointment with the optician for Ethan and there I was told that he wasn’t reading the sight chart very well but he didn’t have a prescription. Baffled by the comment I decided to go for a second opinion and went to another High Street optician who made the same comment. I remember my anxiety rising as I wondered what this meant. Surely if you can’t see properly, you just need glasses to rectify it, I thought. I was perplexed and so worried that I decided to make a private appointment to Moorfields Eye Hospital with the recommendation of the optician. Ethan underwent lots of imaging and testing, and two weeks later I was given the heartbreaking diagnosis:
“Your child has Stargardt’s disease which means he is losing his eyesight and unfortunately there is no current cure or treatment for the condition.”
My heart shattered as I heard those words and stood there in disbelief. It was a condition I had never heard of and it was to change our lives forever.
How could my beautiful, healthy and happy-go-lucky seven-year-old be going blind? How would he live his life without his eyesight? How would he make friends and continue his education? Was there life after vision loss? I had never heard of the condition and it had now rudely entered our lives uninvited and it was here to stay.
Devastation and shock were the main emotions I felt for the first few months after the diagnosis. The pain that I was feeling was intolerable but I also desperately wanted to find a light in the darkest days - I wanted to do something positive; to find a positive. I remember frantically searching on the internet looking for inspiring people who were visually impaired. Could you lead a happy life if you were blind? That’s all I had ever wanted, for my children to be happy.
Children have a funny way of surprising you and rising from the face of adversity. I remember Ethan coming up to me soon after his diagnosis and saying, “Mummy, everyone has problems. This is one of mine.”
I wept silently and secretly, but kept a brave face in front of him, and was amazed at the maturity and bravery he was demonstrating.
What has helped us?
Looking back over these three years, there have been a few keys things that have helped us through the most challenging times of our lives.
Being a primary school teacher, I always teach my class to be resilient, persevere, to rise to challenges and not to give up. It was now time for me to take on my own advice and practise as I preach.
Since his diagnosis, I have not stopped Ethan doing what he wants to do. He plays the guitar and piano, ice skates, swims, runs, plays badminton and does all of these very well.
I told Ethan: “Do not let Stargardt’s stop what you want to do. You can be what you want to be. I will not use Stargardt’s as an excuse for you not doing well – you can achieve and aspire despite vision loss. What you do need is hard work, determination and a can-do attitude”.
I treat him just like I did before his diagnosis. He is expected to help around the house and do his best in his school work. My expectations are high and I know I am tough on him. But I know life can be hard and wrapping him up in cotton wool would do no one any favours.
I have had to build my own resilience too - watching your child lose their eyesight is cruel, helpless and heart-breaking. Since his diagnosis, I have had to face many other separate challenges and there are times where I am not sure how I can carry on. But you do because you have to and there isn’t an option - you keep going and build on the strength and resilience you never thought you had.
Ethan is one of the most happy, positive people I know. He has delivered two whole school assemblies in his school about Stargardt’s, and tells me himself that he doesn’t want Stargardt’s to get him down. Ethan is still Ethan – the same cheeky boy he was before his diagnosis. He is a very sociable child and I have not yet met anyone else who can make friends so easily!
There are of course times where he has cried about his vision loss. His eyesight continues to deteriorate, and he wept in my arms not too long ago, saying, “I don’t want to stop seeing you, Mummy”.
Yes, Stargardt’s is a cruel, heartless thief but I won’t let it steal our happiness and who we are. Stargardt’s has rudely entered our life uninvited, but we are the same family - we can be still be daft, silly and have lots of fun together.
As humans, we are naturally good at adapting and I see vision loss as a classic way of demonstrating this. I remember reading somewhere that if your motorway exit is closed, you don’t just stop the car. You drive on to the next exit. It may be longer but it is doable and will still get you where you want to be.
I had told Ethan when he was diagnosed that although prescription glasses won’t help him see better, he will have other tools to help him such as magnifiers to assist him. At school he has modified texts and a magnifier to help him access the curriculum. He has learnt to touch type and made the decision himself to learn Braille - he told me, "I may need it in the future and I want all the skills I can have to help me as my eyesight gets worse." Being a progressive condition, I know there will be many more adaptations we will have to make, and we will have to learn to take it as it comes.
Building visual memories has been a really important part of our journey. We have been lucky to go on some wonderful holidays, but building visual memories goes beyond that. It is about life experiences and our weekends and school holidays are full of activities such as visits to museums, playdates, parks, going to the cinema and cooking. Perhaps Ethan’s biggest loss is knowing that he won’t be able to drive when he is older. His love and knowledge of cars has always been apparent since he was a very young child. But ever the optimist, Ethan said, “Please can I experience driving now as I won’t drive when I am older”. He goes Go-Karting regularly and has been fortunate enough to even race and train with the World Champion Go-Karter! We live in the moment and make the most of every opportunity.
Ethan’s diagnosis shook us to the very core and, in my many tearful moments, I often wondered, "How am I going to get through this?"
I have been very fortunate and blessed by being surrounded by the most wonderful friends and family, who have seen me at my most vulnerable and weakest, and have helped to lift me when I couldn’t pick myself up. Having the opportunity to express your feelings to someone you can trust such as a family member, friend or a counsellor is vital to be able to get over any challenge. Talking definitely helps and is an important part of therapy.
This has perhaps been the most empowering - meeting other people who are visually impaired and seeing how well they get on despite the daily challenges they may face. This has helped me deal with Stargardt’s significantly and I know it has been really useful for Ethan to also meet them.
When Ethan was diagnosed, I had wondered if there was life after vision loss and the resounding answer I can confidently say is yes of course.
I cannot believe how one sentence can change your life so dramatically - but the impending darkness has not overshadowed us. Stargardt’s has made us find a strength we never thought we had. Stargardt’s has made us meet the most inspiring people we could only dream of meeting. Stargardt’s has made us experience human kindness and generosity from strangers, friends and family alike. Yes, Stargardt’s came uninvited but we won’t let it break our spirit.